At age 5, Kristy McMillan was sexually assaulted by a neighbor’s relative. She had nightmares and wet the bed. And she refused to go near that person’s house — or talk about what had happened.
“There was a lot of shame that I wanted to hide,” McMillan said. “I really felt like I did something wrong, and that it would happen again.”
To this day, she doesn’t know whether her parents were aware of the event. It was a violation of trust, a seed planted early for what would eventually become a 21-year battle with anorexia — furtive and unrelenting — with compulsive exercise, restrictive eating, and diet pill abuse cascading into a desperate quest for self-worth.
“Stepping on the scale was almost a game of how much weight I could lose each day. If I couldn’t do it with food, I did it with exercise,” McMillan said. “My parents gave me the speech: You really need to eat healthy, you need to keep up your weight. But because I was successful in so many ways, I think they thought the problem would fix itself.”
A dancer and a top student, McMillan was hospitalized twice during high school because of low blood pressure and other effects of food restriction and weight loss. She cycled in and out of Boston-area treatment programs during and after college, interrupting her career and marriage, before landing in residential treatment in Philadelphia, a therapeutic expedition that lasted 12 years.
Today a nurse and mother in Belmont, McMillan advocates on state and federal levels for lowered barriers to treatment, and better understanding of eating disorders among lawmakers, health care providers, and the public. She’s a spokeswoman for House Bill 1942 before the Massachusetts Legislature, sponsored by Representative Kay Khan of Newton, that will prohibit the sale of diet pills and muscle-building supplements to anyone under age 18.
“The past is past,” McMillan said. “It’s what I can do for others now.”
According to the National Association of Anorexia and Related Disorders, eating disorders kill someone every 62 minutes as a result of suicide or medical complications. The number of people known to have them has more than doubled in the last 10 years, related in part to more people seeking help as the stigma of mental illness wanes. Experts say most available data is outdated and represents the tip of an iceberg, a behemoth public health concern.
“There are many more people who never come to the attention of health care professionals, who never get diagnosed,” said Douglas Bunnell, a former clinical director of Renfrew and Monte Nido-affiliated eating disorder centers, which operate programs in Boston. “If you look at the rates of subclinical bingeing and purging, losing weight, and restricting food” — harmful habits that don’t yet meet the threshold of full-blown disease — “this is an enormous problem that affects men and women equally.”
Anorexia nervosa, characterized by food restriction or compulsive exercise that triggers medically perilous weight loss, is the second deadliest mental illness after opioid addiction. According to statistics from 2007, anorexia affects about 1 percent of females, and 0.3 percent of males. Today, it’s as common in girls as autism, and 25 percent of its sufferers are male. Bulimia — purging food before it’s assimilated — is more widespread. Binge-eating disorder — out-of-control eating that shames sufferers and stresses organ function — is three times more prevalent than anorexia and bulimia combined, affecting approximately 15 million Americans, and slightly more females than males.
And the dangers are starting earlier: Patients with body-image concerns who are compulsively dieting or exercising to change their appearance are getting younger — a trend that may be tied to a cultural emphasis on losing weight to optimize health, to unrealistic ideals shared on social media, and to bullying online and in schools. Often those who develop eating disorders have a genetic vulnerability that has been triggered by personal experience.
“We’re struck by how many very young people we’re seeing, as young as 9, who very clearly want to change their shape and size and are restricting food intake to do that,” said Dr. Tracy Richmond, clinical director of Boston Children’s Hospital’s Outpatient Eating Disorder Program.
Its clinics in Waltham, Lexington, Peabody, Weymouth, and Boston treat approximately 300 new patients each year. About 150 to 200 of those up to age 18 require hospitalization because of restrictive eating and weight loss, electrolyte imbalances caused by bulimia, or malnutrition because of ARFID — Avoidant, Restrictive Feeding, and Intake Disorder, which is more common in boys and is unrelated to body image or weight control. Children’s Hospital in Philadelphia recently treated a 4-year-old with anorexia.
“Restrictive eating begets restrictive eating,” Richmond said. “It gets easier and easier the longer you do it. It can become a runaway train. Some kids have gotten a ton of praise because they’ve lost a ton of weight.”
Treatment can be hard to find
In Greater Boston, which boasts an enviable choice of eating disorder treatment programs and one of the largest populations of college students in the nation, the prevalence of eating disorders is high. The demand for outpatient treatment outstrips the number of doctors and therapists trained to treat them — a shortfall echoed nationwide, especially in rural areas. In the Boston area, most eating disorder practices are full, and few outpatient eating disorder therapists accept insurance because the treatment is labor-intensive, essential communication with the care team is time-consuming, and insurance reimbursement rates don’t cover all the services or hours spent.
New patients can wait six to eight weeks for a first-time appointment. Children under age 15 wait the longest because of a shortage of practitioners for that age group. Ironically, adolescence is often when eating disorders emerge.
“Part of the problem is being able to connect people to care quick enough,” said Amanda DeStefano, clinical director at MEDA, the Multi-Service Eating Disorder Association in Newton. “The sooner you intervene, the better the prognosis.”
At age 7, Krista Murphy of Norwood, the daughter of two chefs, started wearing baggy clothes and hiding food in her room. She ate compulsively when her mother left the house and whenever she felt anxious. “It intensified over the years,” Murphy said. She started dieting in earnest at age 15. “I wasn’t bigger than other people. But in my head I was.”
Disordered eating more often becomes an issue for kids involved in sports where weight and appearance matter, such as swimming, diving, wrestling, crew, figure skating, dance, gymnastics, bodybuilding, and running. In a 2012 survey of female high school athletes in sports such as swimming, dance, and gymnastics, more than 41 percent reported disordered eating, and they were eight times more likely to become injured than teammates without unhealthy eating patterns.
US surveys show that more than 60 percent of female college athletes and 35 percent of male athletes have eating disorder behaviors or illnesses. At high risk are the daughters of women in active military service. LGBTQ youths have alarming rates, probably because of struggles with identity, guilt, and alienation; 54 percent of the LGBTQ community grapples with eating disorders, according to recent reports.
Although eating disorders occur worldwide in all races, ethnic groups, income brackets, and education levels, the stereotype is still “thin, white, privileged young women who are vain, while most people with eating disorders are in higher-weight bodies,” said Chevese Turner, chief strategy and policy officer for NEDA and founder of the Binge Eating Disorder Association.
Funding is low
Despite their prevalence in the United States, and their proven damage to mind and body, funding for eating disorder research lags far behind amounts for other mental illness. Schizophrenia, which affects fewer people, receives 13 times as much federal funding — approximately $352 million compared $28 million for eating disorders. In 2017, the National Institutes of Health funded Alzheimer’s research at roughly $239 per affected individual, autism at $109, and schizophrenia at $69; eating disorders received $1 per affected person, according to a report coauthored by Bryn Austin, president of the Academy of Eating Disorders and a professor at Harvard University’s T.H. Chan School of Public Health.
“This is affecting our communities,” Austin said. “We need consumer groups, lawmakers, and departments of public health to get behind this issue.” Research funding from the National Institute of Health is “not at the pace or volume” needed to address a widespread mental illness. Studies predict that 30 million Americans will develop an eating disorder during their lifetime.
Experts say lack of data from any recent large population study, overlapping disorders and symptoms, and confusion about what behaviors constitute an eating disorder have hampered government investment — and stymied recognition of eating disorders as a pressing public health issue.
In the last 20 years, two related conditions have flared: orthorexia (an unhealthy preoccupation with organic and healthy food, supplements, and exercise to maximize health), and muscle dysmorphia (compulsive exercise, dieting, and protein supplementation to achieve a muscular look). Both can lead to dangerous restrictive eating and malnutrition, and they require treatments similar to anorexia. And both affect young people.
“People will say, ‘My goal was to be healthy. I just started cutting out more foods,’ ” said Millie Plotkin, a medical librarian and board secretary of the Eating Disorders Coalition. One female who later died from orthorexia remarked, “This isn’t about losing weight. I’m scared to eat things that are not good for me.”
Co-occurring mental illness – and bullying
More vulnerable to eating disorders is anyone with mental illness, such as anxiety, depression, or obsessive-compulsive disorder; a history of trauma or substance abuse; eating disorders in parents or siblings; or a weak network of family and friends. Bullying is another precursor, reported by 60 percent of children, teens, and adults with eating disorders. It can be recent, ongoing, or in the distant past.
“We’ve had children change schools because of it,” said Seda Ebrahimi, director of the Cambridge Eating Disorder Center, which treats patients age 12 and older. “We get kids who are really tortured, especially on social media, with comments about their weight, body, and appearance.”
Parents may fail to notice signs
Parents may not be aware or alarmed until a young person’s habits, personality, and appearance dramatically shift. Some dismiss weight loss as a phase or a passing medical condition.
“Sometimes we see patients who are so emaciated and underweight, we wonder, why did they wait this long? Why did they not intervene sooner?” Ebrahimi said.
Although eating disorders can be successfully and fully treated, fewer than 20 percent of adolescents affected receive treatment, according to the Eating Disorder Coalition.
When behaviors simmer below the radar, valuable opportunities for early treatment are lost. Starving, bingeing, purging through vomiting or laxative and diet pill abuse, and compulsive exercise to achieve a ideal physique become entrenched and evolve into addictions — making treatment drawn-out and complex, and recovery more difficult to achieve.
Experts say parents, the front lines of health care, need to watch for patterns or symptoms that might be mistaken for something else: A fear of stomachaches. An aversion to tastes or textures. Mood swings. Personality changes. Counting pieces of food. Recording how much is eaten or how much exercise is done. Spending more time alone. Isolating after meals. Skipping meals. Food portions getting smaller and smaller. Food choices narrowing and becoming more rigid. Becoming uncomfortable or unwilling to eat in front of others. Food rituals — same things, same time, foods that can’t touch each other. No sugar, no carbs, no dairy — without medical reasons. Caches of food and wrappers around the house. Feeling dizzy after standing. Fainting spells. Drying skin. Thinning hair. Delayed puberty or loss of menstruation. Constipation or digestive complaints. Worries about body image. Mirror gazing. Weight loss or fluctuation. In very young children, tantrums and excessive bowel movements. Lack of growth.
“If a kid loses weight from one annual wellness check to the next, that’s a sign of a problem. If eating concerns are getting in the way of social events, that’s also cause for alarm,” Richmond said. “If a kid seems withdrawn, check where they’re going on social media. There are lots of sites about weight loss. Don’t check in on how much they weigh. Check in on how well they’re doing in the world in general. Come from a stance of care and love.”
WHAT TO DO
Boston-area experts recommend these steps as soon as you spot worrisome clues, or are concerned about changes and habits you see.
First, notify your child’s pediatrician or primary care provider — ideally someone knowledgeable about eating disorders and adolescent medicine.
“Get a through medical work-up to see where they are in weight loss and medical stability,” said Dr. Holly Peek, assistant medical director at Klarman Eating Disorders Center at McLean Hospital in Belmont. Heart rate and rhythm, electrolyte levels, body temperature, and blood pressure (ideally, lying, sitting, and standing) are some important indicators to check.
Reach out to local resources. MEDA, the Multi-Service Eating Disorder Association in Newton, offers consultations, a onetime evaluation, support groups, and referrals to psychiatrists, therapists and dietitians. The William James Interface Referral Service and Therapy Matcher, a social worker referral service, can also connect you with specialists.
For young people requiring more intensive care: the Cambridge Eating Disorder Center in Cambridge (and in Concord, N.H.); Children’s Hospital Outpatient Eating Disorder Program with locations in Boston, Waltham, Lexington, Peabody, and Weymouth; and Walden Behavioral Care in Waltham, with satellites in Peabody, Braintree, Milford, Worcester, and Amherst. Klarman Center for Eating Disorders at McLean Hospital in Belmont offers partial-hospital and residential treatment for young women, ages 16 to 26. Walden Behavioral Care treats patients age 12 to 17, LGBTQ patients, and adult patients.
There’s also The Renfrew Center of Boston, offering day treatment and outpatient services.
Model positive behavior around food and weight. Be careful of the messages you send. What you say about yourself and others shapes your child’s perception of self and hints at what the world values.
Don’t demonize snacks or fast food, or elevate to sainthood organic, farm-fresh items, health-promoting supplements, or micronutrients, and especially do not make them a household requirement. Don’t discuss cutting out certain foods or needing to exercise to lose weight. Ban talk about food — good or bad — and weight — heavy or light — from family discussions that involve children.
“Parents don’t realize what they’re saying,” Peek at Klarman said. “Kids are starving because of intermittent fasting and cutting out food groups. Kids are getting positive feedback when they really have an eating disorder.”
“Eating clean” can be “a slippery slope for someone who has problems with food,” said Therese Roeser, a Concord mother of two, who became anorexic at 14. “No matter what you look like, show your kids that all bodies can be lived in.”
“Promote health at every size. Say something positive about your children that has nothing to do with their looks,” said Brenna Briggs of Rockland, who battled eating disorders in high school and beyond, and who now has three children, ages 5 to 12. “Love them for who they are. It’s really important for them to love themselves.”
Encourage child-appropriate recreation, and pure enjoyment of the outdoors. Nothing that tracks calories burned. “Is Peloton really that much fun? Wouldn’t it be more fun to go outside and ride your bike?” Roeser said. “Never give a kid a FitBit. I see so many parents make that mistake.”
Don’t put your child on a diet at any age, said Turner of NEDA, who struggled with disordered eating at age 5. “Dieting at a young age is a real set-up for problems later. “If there’s a worry about weight trajectory, see an eating disorder specialist. Practitioners remind parents: Kids grow out before they grow up.
Teens often want to become vegan or vegetarian. “These things are OK, but they can also be a red flag if you’re child deviates from the family pattern, and doesn’t want to eat with the family, or connect,” Turner said.
Don’t be silent. Talk to your child about what you notice — and especially what worries you.
“What you don’t want to do is say nothing,” Ebrahimi said. “You can’t go wrong by making a comment about what you see.”
Discourage weight and appearance comparisons among siblings, which can trigger vulnerable children who already may feel they don’t measure up.
Get help for yourself, including counseling for your own feelings, as well as guidance for living with a loved one’s disease. Eating disorders take a toll on family dynamics, energy, and mood.
Most importantly, don’t give up. “My mom had locks on the fridge because I would restrict then binge and purge. She slept by my bed at night because she was afraid I would stop breathing,” Briggs said. “She had to fight for me until I was able to help myself.”
Roberta Baker can be reached at firstname.lastname@example.org.